What is the Toughest Thing About Having Parkinson's Disease?

Mirrors do not always tell the truth, but they always tell you something.

A mirror can be flattering or discouraging. It can make you smile or cry, wince or stare, chuckle or choke. A mirror has tremendous magical power. Take, for instance, the enchanted mirror of the Queen in “Snow White”. Everyone knows what she was hoping for, even expecting, when she chanted, "Mirror, mirror on the wall, who is the fairest of us all?" But instead of the usual, "You, my Queen, are fairest of all”, she heard that some young thing had stolen her claim to fame. That judgment ate at her like acid, driving her to murderous ends to regain her former persona. It was not enough that she was the Queen. She had a self-image to maintain.

Lately, I have been asking myself, "With what aspect of Parkinson's disease do I struggle most?" Does it relate to the symptoms: the tremors, stiffness or fatigue? What about coping with the degenerative nature of an incurable disease? Well, yes, my symptoms are often very frustrating, and the fact that nothing currently is able to significantly slow my slide into more advanced stages of the disease is discouraging. But these are not the toughest parts of Parkinson's.

My "mirrors", unlike the Queen’s, do not usually say anything out loud. They are the eyes of those who observe me. In them I see a question mark. Just a hint of doubt seems to flicker across the pupils as they focus for just a split second on my tremor or my slowness of movement on my right side, the slight hitch in my step. The reflection that speaks to me is the momentary hesitation I see as someone's brain assimilates the message I have just communicated, "I have Parkinson's disease". Despite the fact that these "mirrors" barely whisper, what I hear, loud and clear, are messages like, "You are no longer as strong and capable as you once were", "I am different from you", and, "I feel sorry for you, and I am sure glad that I am not in your shoes."

Of course, just as the Queen and her magic mirror are make-believe, to some extent, so too are the "voices" that I hear speaking from the eyes, posture and silence of others. But, conversely, some of the messages coming from the "mirrors" are true. I am not able to do what I used to do. I have changed because of this disease.

I am beginning to understand that, with ever increasing frequency and intensity, the "mirrors" around me inevitably and unwittingly will be sending messages to my dopamine-deprived brain to process. As with most people, it is disarming to have others pick up on my vulnerability, my perceived or real weaknesses. My response may be defensiveness, denial or diversion. Of course, the alternatives of false flattery can be equally toxic. Sometimes, I find myself believing the almost subliminal messages that I am of less value, a person to be pitied, destined to be segregated, self-isolated, lonely and misunderstood. This inevitably leads to loss of confidence, self-pity, sadness, or even depression.

So what is the toughest part of having Parkinson's disease? It is my processing of perceptions, be they false or true, managing the mirrors society uses, whether intentionally or naïvely, to reflect my value. Are the messages of the mirror accurate, or even partly true? And if so, how am I to best respond?

The Brothers Grimm fairy tale, "Snow White", has another even more somber application to life after diagnosis with Parkinson's disease. While Walt Disney did not portray it this way, in the original ending the Queen was punished for her evil ways by having iron shoes strapped to her feet and forced to dance until she died. Burdened by believing in the heavy messages of the mirrors around us, people with Parkinson's all too often unnecessarily shuffle in a dance of death.

The Queen in “Snow White” could have avoided her awful ending simply by saying in response to her mirror, "Well, second best is pretty good under the circumstances. I need to focus less on labels and external beauty and more on developing my inner beauty." I cannot blame a mirror for my response any more than the Queen could say, "The mirror made me do it!" It is up to me how I process each mirror’s message. I am the one that has to be alert to the messages being reflected my way. I must sort truth from fiction. It is my responsibility to choose how to respond, neither denying reality nor legitimizing fiction. My choices will dictate whether I am set free from the limitations of others' perceptions of me, or die trying to dance in shoes of iron.